Wednesday, December 24, 2014

*John has been waking every night with an excruciating headache. The doctors are confused by the headache; however, they are not overly concerned by it because we are able to manage and reduce the pain on our own at home. However it is still pain, it is still waking him up, and we are all tired of it.

*Then to add insult to injury, last night, while I was trying to load the dishwasher, I knocked a plate shattering it on the ground. I called Noah to help me clean it up and ran downstairs to use the bathroom. As I was coming up the steps, I heard the boys shouting, "Hannah is puking!" I walked into the kitchen to find the shattered plate pieces still all over the ground just a foot away from Hannah's puke puddle. I was near the end of my sanity, as I cleaned up the puke puddle while Noah cleaned the plate. I then had to shower Hannah because the puke was in her hair. Somehow I kept it together (I think because I was praying under my breath the entire way). What followed was even more excruciating all night long I was awakened every 15 minutes by the sounds of Hannah's vomiting. At some point in the middle of that, John woke up with his nightly headache hardly able to walk or see anything in front of him. Merry Christmas!

I am so tired! I literally do not think I've had a full night's sleep since Wednesday December 17th (the night BEFORE surgery #3). I feel horrible, and I'm not sure if it's because I haven't slept... I'm coming down with whatever Hannah has... or just because I've been smelling puke for 24 hours... (I'm sure it's a combination of all three.)

I feel like I can't do this. I feel like this is too much. I feel like God has forgotten us and is letting Satan toy with us, but let me tell you what: FEELINGS LIE.

In recent months, I've been trying to help Hannah through a princess phase in which she burst into tears almost anytime something doesn't go her way. I've been telling her that I know she feels like she has to cry, but she is the boss of her feelings. I've been trying to teach her to tell her feelings what to do. When she feels like crying, I want her to tell her feelings, "No, I don't have to cry. This isn't big enough to cry about."

Over and over again during the past 24 hours my own words have come back to me. "I am the boss of my feelings." I can choose to feel like I can't do this or I can choose to remember that I can do all things through Christ who strengthens me. I can choose to feel like this is too much or I can remind myself that God's plans are to prosper me not to harm me. I can feel like God has deserted us or I can remind myself that God will never leave me or forsake me.

It doesn't feel like a very Merry Christmas in the Kastner household this year. However, I can remind myself "Born is the king!" I can remind myself that thousands of years ago Jesus came to earth as a little baby to die for my sins. I don't have to wallow in the feelings that aren't very merry.

I know some of you who are reading this are dealing with much worse than what I am going through right now. I know the holidays make you feel lonely. I know you just lost your loved one. I know you're struggling through a horrible diagnosis and praying for a miracle. I know it feels like God has deserted you. I know it feels like you can't do this. But you are the boss of your feelings! Tell your feelings what God says about your situation, and then make the choice to believe them!

Whether you're having a very Merry Christmas or whether your Christmas isn't merry at all, I pray that you will choose to remember that God loves you so much he sent His only Son to earth.

Now I'm gonna give both my patients and my old person showers and then head off to bed. I'm praying that I will get just one night of solid sleep that will give me the strength to face whatever tomorrow brings. But even if I don't sleep at all, I'll be the boss of my feelings tomorrow too. Goodnight

Monday, December 22, 2014

Good morning! Just a little update on how John is doing. I'd say pretty well at this point.

Couple of PRAISE reports:

1. John went to church yesterday!

2. We found a craigslist recliner for CHEAP and that has SIGNIFICANTLY improved John's sleeping position.

There are a few things we could still use PRAYER for:

1. the past two mornings he has awoken with EXCRUCIATING headaches. Please pray that we are able to get these under control.

2. Please PRAY for the strength to return to John's arm, specifically his right arm. This is a HUGE concern for him right now.

3. Continued peace as we walk through this. We have COMPLETE and utter trust that God is carrying us through (how could we not after the miracles of last week); however, we are still on a GRUELING, sleep-deprived, pain-filled, hope-threatening journey. Your prayers are appreciated.

Therefore confess your sins to each other and pray for each other so that you may be healed. They prayer of a righteous person is powerful and effective.

Friday, December 19, 2014

For those of you NOT on Facebook.... we did a WHOLE lotta waiting around today (to be expected when you're squeezed into an already FULL surgery schedule)

but by the end of the day John's second fusion surgery took place in 2014 and BEFORE Christmas shutdown!

It took longer than expected (again because of the extra waiting) but by about 5:30 p.m. I was able to get my first post-op look at him and see that he had pulled through JUST fine.

We had a bit of a rough go of it (a LOT of pain) around 9 p.m., but now he has walked the hall two different times, eaten two yogurts, and expelled air in the manner they were hoping for. He is currently resting peacefully.

Because I always want something good to come from my suffering, and before I forget them, I wanted to share with you a few lessons I learned in the waiting room.

1. Keep your eyes in your own fence.

When you're sitting in a hospital waiting room, without fail there are people there for much LESS serious issues than your loved one and people there for much MORE serious issues than your loved one. Paying attention to their situation, looking over into their medical "backyard" does absolutely NOTHING to change the situation your loved one is in. Therefore, it is best when you are in a waiting room (and actually in ALL of life) to keep your eyes in your own fence.

2. He's got this.

Perhaps more than ever before I was GRIPPED by the knowledge that God was in full control of this surgery, my husband's health, my entire life. If you came along for the whole ride (singing, "Rollercoaster... ooooh ooooh ooooh"... all the way) then you know that we were up and down, fast and slow, yes and no, ALL week long.

Because of Tuesday afternoon's MIRACULOUS 180°, I had such a strong and REAL knowledge that God HAD this in His hands. When I felt worry creeping in, I just reminded myself, "The God who put on a light and smoke show to get this surgery on the books did not bring you this far to drop you here. He WILL carry you across the finish line, Jami!"

3. Keep calm and crochet on.

I've noticed this phenomenon before. Sometimes when your are in the "thick of it" it is very hard to pray. I remember VIVIDLY when Hannah had her eye surgery I couldn't close my eyes to pray because every time I did I got this vision of my baby's eyeball being sliced open. I remember thinking, "THIS is why I splash my business ALL OVER Facebook." Because thanks to Facebook (and email and texting) right at the moment my baby was in surgery GOBS of people were praying us through. Today when the surgery stretched on.... when the doctor never came out to update me.... when they told me this time he'd be recovering in the ICU... when I tried to pray but couldn't get much past, "Jesus. ..." I picked up my crocheting and remembered we were COVERED in your prayers.

Thanks so much for journeying with us through yet ANOTHER surgery. I sure hope one of these times we'll be writing the final chapter of this medical saga.

Until then... THANK YOU from the bottom of my heart. Your prayers DO matter!

What, then, shall we say in response to these things? If God is for us, who can be against us?

Tuesday, December 16, 2014

In light of my VIVID dream from last night, I encouraged John to touch base with the doctor this a.m. just to see what yesterday was about and to double check that there was NO WAY surgery could happen this year and with mind-numbing speed, in true THERE'S NO WAY IT COULD BE ANYTHING BUT GOD style:

Things are pretty dark in this house right now. John is EXTREMELY discouraged by the events of yesterday. I am trying SUPER hard to "keep the faith".... hope.... believe.

This morning it's a little easier for me to do that because I awoke from a VIVID dream this morning. It was so real! In my dream, I was on the phone with Dr. Ahuja's office, and they said they could fit John in this year if we were willing to come in on Saturday. I told them I'd come in wearing only my underwear if they could get him in this year, and then there we were FRANTICALLY prepping for a hospital visit. As I came awake, I had to struggle to remember it was just a dream because it seemed SO real.

I'm not gonna lie, I want that scenario SO bad. I desperately WANT to be rushing around making arrangements for a surgery this week. I desperately WANT to be SCREAMING on FB... "It's a miracle! It's a miracle!" I desperately WANT to save money by doing surgery this year, to have this in our rearview mirror, to have my honey OUT of pain. But in the words of the great Mic Jagger, "You can't always get what you want." And the reality is that sometimes (actually more like OFTEN) God's plans don't look like my plans AT ALL. In fact, let me tell you about "the best surprise God ever gave me."

My plan did NOT include having 3 boys in under 4 years. My plan did not include being BROKENO JOKE and finding out, "Surprise! You're pregnant!" My plan included more than one form of birth control and a teeny tiny side-by-side. But God's plan was SO much better. God's plan included this sweet, sensitive, long-eyelashed, smart, funny, KEEP-ME-ON-MY-TOES, little boy named Elijah, and like I always tell him he is "the best surprise God ever gave me."

I don't pretend to know why this is the way. I'm not gonna lie and say I WANT it this way. All I know is that even though I don't like His way, I FULLY believe His way is better.... even though I still WANT my way, I'm going to submit myself to His way.... and no matter when or how this all goes down, I KNOW that we are FIRMLY in His grasp....

being confident of this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus.

Monday, December 15, 2014

Even when we do not get the answer we were wanting, God is still in control.... He is STILL good.

While driving to his 4 p.m. appointment today, John received a call from the doctor's office. They are unable to get him in this year. His surgery is still scheduled for 1/6/15; therefore, they cancelled today's appointment because they do not need to see him this soon.

There is discouragement and disappointment flooding this family tonight. The Mom is praying for PEACE that passes understanding.... for HOPE that will sustain.... for His way and not ours.

Thank you all so much for praying for us. Please continue to hold us close in your prayers.

As the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts.
Isaiah 55:9

Tuesday, December 9, 2014

Yesterday we learned that John has to have yet ANOTHER surgery. To answer a few of the FAQs I fielded yesterday:

*It is a second fusion surgery (like he had last year). He previously had C4 thru C6 fused. This time they will also fuse C3 and C7.

*Once again as I understand it, this was not CAUSED by the Chiari Malformation but the condition is exascerbated by the changes brain surgery wrought on the anatomy of his skull/neck.

*The neurosurgeon we know, love and TRUST feels it is necessary. As neither of us went to medical school, and as we are DESPERATE for some relief for John, and because this doctor successfully cut open John's brain and has led us every step of the way since then, we are trusting his opinion.

*Yes, we did see this coming. In recent weeks the strength in John's arm has been DRASTICALLY decreasing, the pain in his neck has been DRASTICALLY increasing, and he is RARELY able to sleep.

*Yes, I will let you know if there is anything you can do for us. For right now, please STORM the gates of Heaven begging God for a slot to open up in the 2014 schedule so that John can have this surgery under this CURRENT year's medical claims and so that he will have the extra days of Christmas-to-New Year's shut down to recover.

As is typical, I ran the WHOLE gamut of emotions yesterday:

*ANGER: Lord, WHY now? WHY again? WHY NOT before the end of 2014?!?!?!

*FEAR: What if this doesn't go well? What if this doesn't work? What if? What if? What if?

*ACCEPTANCE: 2014 or 2015 DOESN'T matter. my stress here is over MONEY (money it will cost us in the brand-new calendar year; money we may lose if John ends up out of work without pay) and money does NOT matter. I am a daughter of the King with His FULL resources behind me. I may not WANT to walk through a valley of need again, but if I do, I need NOT fear because my Father will supply ALL my needs according to His riches in glory....

*HOPE: Never once.... not ONCE... in the past 5 years we've been walking this medical journey... in the past 16 years I've been joined to this man.... in the past 45 years I've been on this earth.... NEVER ONCE did we EVER walk alone.... NEVER ONCE did You leave us on our own....

I found out around 4 p.m. yesterday. I was a PUDDLE of tears, yet a still, small voice whispered to me "PRAYER." I found the strength to post a FB plea:

Then I gathered my babies, and we dove into prayer. There were a LOT of tears as I prayed (but my tears are a REGULAR house guest here). When John's turn to pray came, he paused after just a few seconds. As the length of the pause grew, Hannah must have looked up and with awe and wonder in her voice, she said, "Dad's crying." As far as I can remember, that is the first time during this medical journey that our children have seen him cry about it. He doesn't cry from the pain---no matter how bad it gets. He wasn't crying out of fear---honestly this man RARELY knows fear. He was crying out of a place of SHEER EXHAUSTION over all he has traveled through and out of WEARINESS from watching us struggle along with him. The end of his prayer gutted me, "Lord let ALL of the difficulty of this situation fall on MY shoulders. Protect my family from it." OY!

So as we enter this next valley of difficulty, there will be close to a JILLION things you could pray for us (and don't hold back! Let the Spirit lead you to WHATEVER topic He puts on your heart. We are NOT picky. We will take ANY prayers we can get.)

But for today, the top 3 are:

1. Pray for John. Pray that he may gracefully travel through this valley.... that he will TRUST God... and that he will FINALLY find RELIEF.

2. Pray for our children. Pray that God will use yet ANOTHER time their daddy has to be cut open to pull them CLOSER to Him.... to INCREASE their faith... and that Satan would NOT be given a foothold of fear or bitterness in ANY of their hearts.

3. Pray for this surgery to happen THIS YEAR. I realize that these money worries are just "fluff 'n stuff" but walking through previous seasons of need and desperation have left me with what feels like a form of PTSD and while I know that God WILL get us through whatever comes, I really, really, REALLY do not have ANY desire to add yet ANOTHER thousand dollars of bills to the Kastner Medical Bill quagmire.

To those of you who have journeyed with us the entire time: THANK YOU for your continued prayer. I would have COMPLETELY understood if you had grown tired of our woes and distanced yourself from our situation. I often wish I could just escape it too.

To those of you who have recently joined our lives: previous blogs (especially from the fall of 2009, the winter of 2011, and the end of the year in 2013) may help you get up-to-speed if you desire, and THANK YOU for joining us in prayer.

To my family: you are my ROCK. Besides Jesus there is NO ONE, NOTHING that has been more precious to me through all of this than you. Thank you for CONSTANTLY jumping to help me... For clutching me so tightly in your prayers... For opening your home (and your elliptical trainer) to me when I need to flee the stress for a lil bit... For letting me scream, cry, and say REALLY stupid things to get the gunk out of my heart... And for forgiving all my faux pas in the midst of difficult journey.